A cupcake in a world of muffins
All the cliches about time are true. It marches on, it goes by so fast, it waits for no one. We know it, and yet, as parents we can still find ourselves flat-footed and emotionally unprepared when a big milestone arrives.
Today is one for me. E turns 13 today. My girl’s a teenager now, growing up in leaps and bounds and putting it all together, the world and her place in it. I see an amazing young woman emerging, the shadow of little kid fading away.
I’m proud of who she’s becoming. (Can I brag a little? It’s her birthday.) Oh, sure, I could highlight the obvious things — her talents, her intelligence, etc. I’m proud of her accomplishments, as any parent would be. And I’m quick to get weepy (and thus mortify her) at her all-county concert or her big ice skating show. This June, she’ll be doing her first skating solo! Cue the waterworks. And the photos.
But I’m most proud of how she is on the inside, the stuff that makes her “a cupcake in a world of muffins,” as Maddie, one of her favorite camp counselors, described her:
She’s tender-hearted. She’s kind and empathetic, a loyal friend and supportive peer. Last year at her recital, after a boy she’d never met before who was socially awkward and shy played his piano piece, she tapped him on the shoulder and offered an emphatic, “Great job!” She thinks to do those things. (She’s not always this way at home, truth be told. But this is how she is in the world, and it makes me happy to know and witness it.)
She cares . . . a lot . . . about the world. From animals to preventing climate change, E has shown great interest in learning about the world her generation is inheriting and finding ways to make it better. This fall, when considering the option of getting solar for our new home, I asked for her input. I explained we’d need to make a choice, as we couldn’t afford both: Either get the panels now and delay her long-awaited dream vacation to Paris another year (or more), or forego the panels in favor of taking the trip. Without hesitation, she replied, “Get the panels!” (We did.)
She’s fun . . . and so funny. From her infectious, staccato laugh to her funky interpretive dancing to her off-the-cuff quips, her sharp sense of humor continues to grow in unexpected ways. And so far, self-consciousness hasn’t held her back. I hope this continues and her light isn’t dimmed by teen angst.
She’s a fighter. I’ve written about this a lot already, but I am so grateful for how strong and brave she is. Turning 13 marks the age at which she’s spent literally half her life grappling with two serious medical conditions: first, ITP, a rare blood disorder, and now, Crohn’s disease. We’re hopeful she’s conquered the first, with the help of an amazing doctor and the latest treatments. Unfortunately, this victory was immediately followed (shortly after turning nine) with more troublesome news, that there was an incurable underlying condition entering center stage. Her tenacity and pluck have been pushed to the limits, but they’ve never wavered. I wish it never happened; that she never would have had to call on these strengths to get through dozens of hospital trips, visits to the ER, invasive procedures, pain, medications, steeling herself for test results, and having to comply with the poking and prodding of a host of doctors and nurses. But we’ve learned that while attitude isn’t the whole battle, it is a huge part of it; that you do still have a choice—you can succumb to despair, or you can try to get past it. She’s a silver linings kind of girl. She has fought hard to live fully, and not allow her physical issues to define her. And they don’t! She’s done that for herself. That’s all her.
My girl is fierce, in the best possible way. She challenges me to be my best self for her, and it hasn’t always been easy. But it’s always been worth it. So happy birthday to my cupcake, my teenager! You make me proud, every day. And I love you more than you could imagine.
Baseball hurts, part deux (World Series version)
When you come to a fork in the road, take it. — Yogi Berra
It’s fall now. Peak leaf season, beautiful by me and I’m sure by your old house, too.
Tonight is Game 1 of the World Series and – guess what? – The Mets are in it! I know you’d be glued to your TV rooting for them; they really have a fantastic team this year. I wish you were still here so we could talk about their chances (I think they’re good!). I miss hearing the excitement in your froggy voice when you discussed the things you enjoyed the most.
Some other developments since you left us: First off, because I know you’d ask this first, E is doing really well. She looks and feels fantastic and is growing like crazy now – more than three inches in the last six months. We had a little blip late spring, but in her last round of tests her inflammation number was way down – to normal levels! So that’s been a huge relief and she’s having a great school year so far. Seventh grade is for real, but she’s even taking all the additional homework in stride (most of the time).
B and I finally got married. I know in the beginning you didn’t know what to make of him. It’s funny that, though you were gifted in your work, you helped so many people navigate their inner worlds and overcome their struggles, I think you never quite understood shyness. Didn’t know what to make of it, thought it was more than what it was, had to be some sort of underlying thing. I guess everyone has blind spots. Anyway, I think B was growing on you the last few years, as he tried to open up more and you tried a little harder to get to know him. So I think you would have been happy and had a good time that day; at least, I hope so.
Mostly things are moving forward in a positive way and I’m hopeful about a lot of things. But as we round the corner to the anniversary of your passing, I still find myself not quite believing you’re gone. Sometimes you show up in my dreams, in such an everyday way that it takes me a moment to get back to reality, that there is no more every day with you in it. And despite the problems we had, and the gulf that remained between us (smaller than what it once was, but still there), that feeling –- the knowledge that you’ll never be here again –- it still hits me like the hardest sucker punch. I’m sure in time it won’t hurt so much, but I’m not sure when that time will be.
So yeah, Dad, I thought you’d want to know that tonight’s the World Series. Lets Go Mets! I wish you were here to see this. But I hope they win and I’m imagining you cackling and cheering them on. The old man who was once a boy from Richmond Hill who loved the Brooklyn Dodgers. Who waved to Jackie Robinson and he waved back.
Love you, K
The Tenacious Miss E
Eleven years ago today, she came into my life and it’s never been the same.
E, you’ve taught me so much. I am so grateful for you, every day. Your courage, humor, warmth and indomitable spirit inspire me to be better. You fight so hard to live your life fully, as if nothing ever happened to you–no parents divorcing, no chronic illnesses, no pain to contend with. And you succeed! So brilliantly.
Look at you. A young lady now. You’re everything I hoped for and more in a daughter: kind, effervescent, smart, clever. Beautiful inside and out. And so funny. You make everyone laugh. You have many talents, but you’re not boastful about any of them, because you don’t see yourself as better than anyone else. Many years ago, I told you the lesson about how to have a friend, you have to be a friend. You got it immediately. You are such a loyal, loving friend. It makes me proud to hear you with your friends, how encouraging you are. How you listen to them. You care so much about the world and you want to make it better with your whole self. I love what you said recently to me: “Mom, when I grow up, I want to make a million dollars, so I can turn the whole town solar.” You care deeply about the earth and animals and what’s going to happen to all of us. I love that so much about you. And your sense of fairness–you never want to be treated any differently, no special favors, despite all you’ve gone through.
And most of all, I love that you’re such a fighter. Nothing will stop you from living a full life, because you’re so, so strong. My brave girl. You make me want to be stronger, to be what I need to be for you. I love you, my tenacious Miss E. Happy birthday.
The Fog Is Lifting
Early January is a notoriously depressing time of year. There’s the post-holiday mood dip; the lack of warmth and sunlight; and the get-back-to-work frenzy, none of which spell joy for many of us. I, for one, hate winter. Always have. This time of year, I have to remind myself I live in a Northern town for the other three seasons, all of which can be spectacular. I don’t partake in many winter sports, except occasionally ice skating, mostly because of my iceberg feet. They won’t fully warm up until June, which I am eagerly anticipating.
In my mind’s endless dance between realist and optimist, I take solace in the fact that the days are getting longer, that in a little more than two months’ time, the first signs of spring will emerge. I try to get outdoors and take nice walks with my dog, Nadine, when it’s not too frigid out. She has always preferred this time of year; with her furry, black coat, she bakes in the summer sun. My “Winter 2014” Spotify list alternates between sad and upbeat tunes; the sad to immerse in the winter vibe, the joyful to snap me out of it. These tricks work only so well to keep the melancholy at bay, but they’re better than sticking my head under the flannel sheets until someone wakes me up to tell me I made it, it’s April. (Not that I could do that, anyway. But sometimes I’d like to.)
Always this time of year we think about the year that was. For many of us, 2013 was a hard one. For me, too. I lost an old friend, quite suddenly, in June. He was 45. Aside from the grief of this loss and feeling for his family and closest friends, it was yet another reminder that none of us has a guaranteed shelf life. His mass card sits by my computer now; his spirit—loyal, funny, always cheering his friends on—a reminder to believe in myself, because that’s what he would say to me right now, if he could.
Work progressed on my impending divorce—now nearly six years in the making. Lawyer 2.0 got things moving and convinced the judge to rule in my favor. It took three hand-wringing court dates to get there, and too much paperwork, but I got what I wanted: custody and child support. But it is still not final, we still need final judicial review/approval. I’m told that will happen by the end of January.
E’s pain reemerged, and her second colonoscopy revealed the continuing presence of widespread inflammation. A major change in treatment was needed, and we were able to take action immediately without changing any of her summer plans. This worked, but only until September, when the pain returned with a vengeance, just in time for the start of school. She lost nine pounds and missed the whole first week, only to return anxious that she would not catch up. (Of course, she did. Kudos to E and to her teacher, who was able to calm E’s nerves and get her into the mix immediately.) To stem the tide, a 20-day, low-dose course of the dreaded Prednisone was added—my last resort. Meanwhile, the doctors rejiggered her treatment plan. By December, E was much improved physically and emotionally. The trial and error of the last few months had paid off.
As I look back to 2013, there was pain. There was frustration. And worry. And sadness. But there was also progress.
I miss my friend, and am sad we didn’t get to see each other these last few years. But I will not forget him, and I’m choosing to use his memory to inspire me to be the best me I can be: empathetic, kind, capable, fun.
I am nearly divorced now. It is a matter of weeks. Now I can focus on my future with B. We hope to be married soon.
E is getting better. There’s a chance that this new course of treatment will keep her in remission for many months, perhaps even years. I toe the line between hopefulness and realism, while continuing to educate myself on what else can be done to keep her healthy. And fundraising for a cure. I dream that within her lifetime, and maybe even in the next decade, Crohn’s disease will be curable. It could happen.
It’s January. A time of year I truly despise. But after a hard year of challenge, change and progress, the fog is lifting. Icy toes, polar vortexes, dirty snow—they’re not bringing me down. I’m looking forward. Maybe all my dreams won’t happen in 2014, but we’re getting closer.
It’s been awhile since I’ve hit the blog, and not because there wasn’t much to say. This summer’s been chock full of drama and reflection and some disappointments.
In early June, I learned of an old friend’s sudden passing—way too soon and heartbreaking for anyone who was lucky enough to know him. I think of his family often: his wife, and the way they would huddle close in conversation. She was his true north, he, her biggest cheerleader. And his kids: I didn’t get to know them, but I have no doubt that he was an amazing dad, infusing their days with empathy, laughter and his infectious joy for being alive.
His spirit is another reminder of how I aspire to be, reminding me of one of my most-often-used parenting mantras. Since she was little, and even before she got sick, I would tell E to try to “be Piglet.” Funny, in a way, because her favorite stuffed animal—the one who has joined us for every hospital visit and is by her side every night—is Eeyore, whom I’ve always loved and, in fact, this Eeyore used to be mine. There’s something so irresistible about that sad-sack donkey. Her hand-me-down Eeyore is pretty threadbare now, and I long ago lost his detachable tail (bad Mommy), but he’s still holding up pretty well considering. I think it’s all the love.
Why Piglet? He’s little, but he doesn’t let that stop him. He’s feisty, he’s capable, and he’s got a big heart. He loves his friends, and he works hard at things. Sometimes, he doesn’t always know his limitations. Sometimes he frets. Sometimes he makes mistakes. But overall, it’s his attitude that makes him the one to emulate, especially in the more trying times.
More specifically, there was a Winnie the Pooh story I often read to E when she was little. Piglet was inviting all of his friends over for tea and special cupcakes. He had a new recipe and was very excited to bake for them. But he made some sort of mistake in the mixing, so instead the cupcakes became one massive, doughy pile. When he saw it, he was at first distraught. But then he took a deep breath, regrouped and said, “I’ll just call this my ‘Make-the-Best-of-It Cake’!” So he decorated it. Soon his friends came over, they had a great time and complimented him on his baking achievement.
Be Piglet. Make the Best of It. That’s what I always tell E to try to do. Life is not always perfect, and sometimes it’s hard. Hers has had many challenges, for sure. But we have no other choice than to make the best of it. So when we got disappointing news at the end of June—the endoscopy/colonoscopy still showed widespread inflammation, meaning her Crohn’s was still active—we dealt with it. It was not good news. She needed to change medications immediately, but we worked with her doctor to schedule the infusions around sleep away camp, which E had been anticipating for months. She still has pain, which is not optimal. But it’s not debilitating (a four or five on the 1-to-10 scale), lasts about a minute or two where it used to last much longer, and has lessened to 1-2 episodes a day. Overall, she’s having a surprisingly good summer, considering how it started.
E really is making the best of it. I’m proud of her. Now I’m trying to remind myself that I need to be Piglet, too.
“Before I knew you, I thought brave was not being afraid. You’ve taught me that bravery is being terrified and doing it anyway.” — Laurell K. Hamilton, Blood Noir
That’s it. Exactly. Since E was diagnosed with Crohn’s Disease last June, the near-constant din of worry and fear has stayed with me at varying volumes and intensity. Right now, it is my music.
Last week, E’s doctor informed me that E’s latest test results revealed lower-than-optimal drug levels. I was told to be on alert for any renewed symptoms and to report them immediately, at which time the doctor would likely add a medication. Despite my frequent inquiries about how she’s feeling, E didn’t let on that the pain has returned. Until Monday night, when she spilled the beans that she’s been in pain off and on for the past week, and increasingly so.
“Why didn’t you tell me until now?” I asked (calmly, because I am well aware of the contagion of moods, and the last thing I want to do is to raise her anxiety level).
“I wanted to make sure that’s what it was,” E said (as in, not just a passing thing).
I get it. (Though I wish she’d told me sooner. We’ll have that conversation another day, when she’s well enough to hear it.) She doesn’t want to take more drugs. I don’t blame her. I’ve been pushing the doctors to get her off whatever we could as soon as we could, and it’s worked pretty well since the summer, where her flare necessitated multiple meds and, as a last resort, a four-week course of steroids. Her admission must have felt like a failure; like we’re taking backwards steps. Are we too late to stop it from a return to last spring’s debilitating symptoms? Or will she start feeling better soon? In my research and conversations about Crohn’s, the stories run the gamut. There is no one typical path. So we don’t know which road we’ll be on, which makes uncertainty our reality.
Uncertainty is hard for everyone, especially a planner like me. But when you just don’t know what your tomorrow is, it reminds you to celebrate today. Today, E is home. It’s not a great day–she’s not feeling well, nauseated and exhausted. But here’s the flip side: I get to spend the day with her. I get to be the one who tells her it will be alright. More than anyone, she trusts me with her care. And I will not let her down.
E inspires me with her innate bravery, her fierce determination to live her life fully and be like every other kid. But I need to be brave, too (these bracelets–called Bravelets*–remind me to be strong for her). I’m here to shoulder the brunt of the worry so that she doesn’t have to.
“It’s not the size of the dog in the fight, it’s the size of the fight in the dog.” — Mark Twain
*Bravelets are wonderful bracelets where $10 goes toward the associated cause per bracelet. They all bear the “Be Brave” motto and come in different colors depending on the disease/disorder/cause. (For the ones I wear, the $10 goes to the CCFA, the Crohn’s and Colitis Foundation.) There are bravelets for cancer, autism, heart disease, and many other diseases and disorders. http://www.bravelets.com
Stressing the Stress
I should be happy right now. E, diagnosed last June with Crohn’s Disease, is doing much better. She has had few bouts of stomach pain the last few months and we’ve been able to reduce her meds from seven to one. Her latest test results show she’s bounced back from her bad flare-up last year and the inflammation numbers are much lower. All good news.
In many ways, I’m thankful for how attentively her pediatric GI has handled her case. They are thorough and scientific in their approach, and have looked at everything from inflammation numbers to liver toxicity to vitamin D levels, ensuring nothing is overlooked. In the past eight months, E has had a colonoscopy, endoscopy, CT scan, hand scan to determine her growth rate (because of the steroids she was given in her early treatment for ITP, and because she’s small, there was concern that her growth may have been stunted; luckily, it hasn’t), bone density hip scan (steroids can also cause osteoporosis; negative), MRI, sonogram (to determine if pancreatitis was developing from one of her meds; also negative), and numerous, sometimes weekly blood and poop tests. We have a clear sense from all of this of her progress, which has, by all accounts and test results, dramatically improved. The fact that she’s been amazingly resilient through all of this, too, has only increased my admiration for her. It gives me comfort knowing this resilience will carry her though other life challenges, and I’m grateful she’s got it in spades.
So I should be happy. But as her caregiver and the one who makes the decisions, I’m finding myself at a crossroads between what the doctors now want—another colonoscopy–and what my intuition says is best for E right now.
Medically speaking, I have no right to question these doctors. When I vented to her hematologist, Dr. B (who is like a god to me, he got her off steroids and, eventually, got her ITP into remission) about all the tests she’s been given, he gushed at how thorough her GI doctor was, what a good job she’d done managing E’s Crohn’s to get her to this point. He thought E looked “better than I’ve ever seen her” and told us to come back in six months, the longest stretch we’ve gone so far between visits. From a case management perspective, the docs are doing their job, and doing it well.
But E is not a case. She’s a nine-year old kid who just wants to be healthy and go to school, play with her friends, sing, draw, ice skate, maybe even go to sleep-away camp this summer. She’s been scoped and poked and prodded and asked to drink disgusting, foreign fluids until she threw up. She’s been scanned up and down and sideways, and put into a large, loud, claustrophobic machine and told not to move for an hour (she did better than most adults, the technician said). She’s been needled and she’s pooped into plastic containers. And she’s handled it all with grace, charming every medical professional along the way with her can-do attitude and appreciation for their help.
But now, the prospect of another scope is stopping me cold.
A month ago, her GI doctor brought this up, just minutes after introducing me to their in-house nutritionist, explaining, “We like to treat The Whole Child.”
The irony was not lost on me. Here’s the thing, docs: The Whole Child is not a case. She’s a child who needs a break from these tests, to start to feel normal again. She’s a child who has two autoimmune disorders. They know remarkably little about the triggers for these types of diseases, but they do know that stress is a factor. They just don’t fully know how much of a factor it is. My guess is, it’s a leading cause.
And the scope last year—the 30 hours of prep, and then the after effects that brought us to the ER the next night to make sure there weren’t complications—was the most stressful of all of it. The doctor says this one won’t be as bad, because she’s not in the middle of a flare-up. The doctor says after this one, she won’t need another for 2-3 years. But given that they seem to love testing, what if she has another flare-up between now and then? Can I be assured that they won’t ask for another scope then? And more importantly, what does the Whole Child want?
Will I just go along with it out of blind trust that doctors know more than I do—a bias grilled into me by my father, a doctor, and the memory of my grandfather, also a doctor? After all, I’m just her mom. I didn’t go to medical school. Or will I say no, the prospect of more stress would be deleterious to her condition, a.k.a., not worth the additional data they’d glean from it?
I need to call the doctor to talk it over. But instead, for the past few weeks I’ve found myself sitting on the fence stressing her stress—and mine—and avoiding the conversation.
Today I will make the call.
Confessions of a Latter-Day Christmas Celebrator
In case you missed this plot point, it’s the most wonderful time of the year! Christmas, that most revered of holidays, is upon us. It’s time for eggnog (yuck) and Yuletide (what’s that?) and lights (multicolored? or white?) and decorations (illuminated fawn, no blow-up Santa), trees (wow, that’s big) and exuberant children. And presents. Lots and lots of presents.
I’ve had Christmas envy my whole life. Growing up, I wanted to be Catholic: There was the beautiful stained glass, there was good music—in Latin!—and there was CCD, that mysterious after-school activity that took out many of my friends every Wednesday. My mom barred me from midnight mass until my senior year of high school, for fear I would convert.
Alas, no such transformation would occur, and many years later, I remain the lame Jew I always was. But through marriage, almost-divorce and now in my new life with child, almost-husband and almost-stepchild, Christmas is alive and well, and living in my house.
To be fair, we celebrate Hanukkah, too. But it’s not the same thing. Growing up, Hanukkah was a holiday to light candles, say a quick Hebrew prayer (poorly), get a nice gift the first night, skip a few nights because you forgot, and get some socks the rest of the nights. It was fun; it was festive. But it was not Christmas. We’ve kicked it up a notch now, and the kids love lighting the menorah. But it’s still not all that big a holiday, and I’m told it never was intended to be.
So now I get to join in all the fun of the big one. And mostly, I dig it. But sometimes I do feel guilty, like an Xmas impostor (see, right there: B, the almost-husband, informed me a few Xmases ago that you really don’t use ‘Xmas’ in cards. And you DEFINITELY don’t say ‘Xmas’. That’s only for labeling boxes. OK.)
When we do our annual pilgrimage to the farm for the Christmas tree, each year I try for the little one in the corner, as if a smaller tree would make it OK, would keep my beloved, deceased Grandpa Ilo from hitting me with a disgusted “Aaaaaach!” from on high. It never works. Real Christmas celebrators always, always want a big, healthy-looking tree on which to hang the tinsel and lights and myriad, often breakable decorations. So every year I am outvoted.
Then there’s Santa. No one told me the rules about Santa, so I kind of winged it. Now I have a personal relationship with the big guy—when E has had issues or questions, I can summon him at will, and I get answers no one else can hear, even this time of year, when he’s super busy. You wouldn’t think an impostor like me would have this kind of access, but maybe that’s just another Christmas miracle.
So tonight we will make cookies and leave them out with a glass of warm milk (I tried to point out to E that the milk won’t stay warm by the time S gets here. She looked at me dumbfounded, like I had five heads. See, I really don’t know what I’m doing here.)
And tomorrow morning, the kids will wake up way too early, see the presents Santa brought, and wake us up, excited beyond measure. And for what will take one-quarter of the time the wrapping did, they will open their presents with unbridled joy.
Tomorrow morning, they won’t be two kids grappling with chronic disease (E) or being on the autism spectrum (K). They’ll just be two happy, happy kids. And tomorrow morning, we’ll be the parents of two happy, alive children, though our minds will undoubtedly slip to those whose Christmases will be altogether different. And we will know how lucky we are.
Merry Christmas to all.
Three years ago today . . .
. . . my daughter, E, then age six, was diagnosed with ITP, a rare blood disorder. This photo was taken that night, as she was wheeled from our local ER into an ambulance that would take us to Westchester Medical Hospital, our home away from home for the next seven months. Three years, dozens of hospital visits and overnights, a plethora of medications, and several doctors later, her ITP has stabilized. But before we had a chance to fully celebrate this news, this past spring, an underlying condition, Crohn’s Disease, has emerged as the bigger threat to her return to good health.
Before December 5, 2009, I never understood how people who experienced a life-threatening illness—either having it themselves or being caregiver to an afflicted loved one—would say they were grateful for what it did to them. Now I do.The hope is that when something really bad happens to you, you learn from it, and hopefully evolve into a better form of you. I think we both have.
Here’s what I’ve learned from all of this:
1) Life has lots of good and bad. Life is not about fairness. Or God, for that matter. God didn’t do this to E. Sorry, I just don’t buy it. If there is a God, she doesn’t micromanage. Shit really does just happen.
2) If you get stuck in the “Why?” you can never get to the “What do we do?” That said, it’s important to take the time to grieve and process. But not live there; move on.
3) The Caregiver’s Guilt–why couldn’t I take the hit instead of her?–serves no one. The caregiver’s job is to be strong.
4) You can’t dig yourself out of a hole if you can’t get past the hopelessness. If that’s where you are, get help. As my doctor said to me,”The mind is not equipped to handle this much stress for this long.” And yeah, sometimes that means meds.
5) Caregivers need to do whatever it takes to heal themselves, sans guilt. In my case, it was a few months of happy pills, followed by continued practices like therapy, acupuncture, hiking, deep breathing/yoga, blogging/other venting via social media, and time with family, friends, and B, my partner in love and life.
6) Celebrate the good moments. Nothing like a health crisis to teach you that you can’t take life for granted, and that every pain-free day, every joyful new experience, is a reminder that life is about the now. You get through the bad days so you can have better ones. And then relish them.
7) It’s an honor to be the caregiver. Having someone trust you with their life, their well-being. I wouldn’t want it any other way.
8) Love is everything.
Summer of my Discontent
Today is the first day of fall, and I’ve been looking forward to the change of season for a while now. Summer is usually my favorite season: I love all of the opportunities to swim, hike, be outdoors for hours on end and wear dresses without feeling cold. But this summer—I guess the best I can say is we got through it OK. Overall, it was a rough go.
It started off badly and got worse, then somewhat better. By June, my daughter, E, was having acute stomach pains, and despite two rounds of tests that said she was negative for IBD, her inflammation marker was very high. The last two weeks of school were torture. I called the doctor and moved the colonoscopy/endoscopy up a week. E got through the tests like a trooper but the news wasn’t good: Widespread inflammation indicative of Crohn’s disease. She was put on a host of meds; for several weeks, she only marginally improved. After fighting to avoid steroids but seeing little improvement, I relented. It was back to the pred again–a four-week stint, less than she’d had in the past for ITP, but the last thing I wanted. Friends in-the-know told me not to fear it this time. They were right: E started feeling better after a few days, and was virtually symptom-free for the last weeks before school. Our last visit to her GI in early September brought more good news: Nine days after going off steroids, the inflammation dropped to normal levels. All was looking up. We took her off another medication.
But in the past few weeks, the pain has returned. So we’ve added another medication. And completing a new round of tests. And she’ll be having an MRI on Columbus Day. And she may still need to see this world-renowned immunologist to rule out anything worse (as if two chronic autoimmune diseases, one of the blood, the other of the intestines, weren’t enough). I feel like a stranger in a strange land: GI-Ville, where little is known but much is tested. I wish I knew how to get us to a better place, but right now it feels like we’re walking down an unfamiliar road in a place we’ve never been—in darkness.
It’s not all gloom and doom, though. When I step back, I can see we’re holding our own, able to enjoy the good days without globalizing the not-so-good. We’re still having fun. We still laugh a lot. But I’m finding it exceedingly difficult to maintain a state of calm. The worry is incessant, like the ocean tides. Sometimes it’s low, sometimes high–but always there, reminding me that something just isn’t right. My child is sick. Again. And being like this for so long now, I’m starting to question whether I’m able to see things straight anymore. The rawness of it makes me question my ability to get a good read on things; I question how my emotions are skewing the picture. Am I overreacting too much? Am I turning what used to be minor annoyances into small-scale catastrophes? Am I fighting to be right instead of leading with kindness (my mantra to E)? I hate the drama of it all.
I’m hoping the change of season will reveal whatever our new normal is. Maybe then we will enter a new chapter of understanding, acceptance and peace.
Into the Land of the Many
“I am not what happened to me. I am what I choose to become.” —Carl Jung
I have a lot to say right now but not much appetite to say it. Thoughts swirling around like mini-maelstroms, some helpful, some not. Like a turtle my M.O. has always been to suck myself back into my shell when times are tough. I don’t want to be seen as anything less than plucky, hopeful, a fighter. I don’t want people feeling sorry for me, or us. But I feel compelled to poke my head out and say it right now. The writer in me won’t let me go it alone.
It’s been a few weeks since learning that my nine-year-old daughter, E, who just recently went into remission for a rare blood disorder, ITP, now has been diagnosed with another serious, chronic lifelong condition: Crohn’s Disease. Ever since, we’ve been dealing with the immediate crisis of getting her over this flareup. The interim plan seems to be working: The inflammation was down somewhat last week, and she seems to be having fewer bouts of pain and they are of less severity.
All promising. But it’s not helping much with the crushing blow of having something else to contend with, getting in the way of just living a normal life (whatever “normal” is, still not clear on that). A carefree childhood, I guess, is not in the cards for E. And maybe it’s not in the cards for too many children these days. But I still can’t help but lament the fact that E’s path has been so difficult—downright treacherous at times—even for a tough kid like her. At what point will her mind say, “Enough!”?
We’re back to taking it day by day. And it’s going OK, I guess. Though it often doesn’t seem that way. Exhausted all the time, I’m having trouble focusing on things like work, completing errands and finishing household tasks. Like laundry: I get to the last mile but then can’t seem to put it away, so there are piles of clean laundry sitting in baskets for days. Mocking me.
So I carry on and try to accomplish the important day-to-day tasks as best I can. And I try to pepper our days with things to look forward to. And I try to find funny things to laugh about, because life is still funny no matter what. But it’s a struggle.
I know that this is hard and it will get better. But I just want this part to be over with.
My therapist says, “It’s OK to feel devastated by this news. Allow yourself to do that. It’s devastating.”
E says: “I don’t want to take all of these meds. They may help my body, but they’re not helping my spirit.”
Tuesday night E has her first appointment with a child psychologist to help her grapple with her feelings. I’m hoping this will help her. To my mind, she’s a therapist’s dream: articulate, in touch with her feelings and willing to express them, and in need of the kind of help that goes beyond what any parent can do.
Meanwhile, every day I learn of someone else who either has or knows someone with this disease, which I appreciate—we need the support, clearly—but I’m still in that overwhelmed phase where I can’t process all of this. Part of it is culture shock, because we now have gone from the land of the rare (ITP, 1 in 30,000) to the land of the many (Crohn’s, 1 in 200). I’m used to people not knowing anything about E’s condition and having to explain it. I even have a long and short version of that explanation (the short one is about 45 seconds, skyscraper elevator-pitch length). With Crohn’s, seems like everyone knows someone or knows something about it. But not all of the input is especially helpful. (Note to the seemingly well-intentioned: If you want to tell me about your family members who have had this, in the future, please refrain from mentioning that, in fact, one died of it.)
Retreating back to shell: Please forgive this self-indulgent pity party. And my need to get this out there. But maybe it will help get us to a better place.
So here we go again on our journey back to good health. Two and a half years after being diagnosed with ITP at age 6, my daughter, E has now been preliminarily diagnosed with Crohn’s Disease.
With her ITP in remission, this new news is a huge setback to E, who, more than anything, wants to just live her life like a normal nine-year-old, without pausing for things like medications, blood tests, hospital visits, and worrying about whether her stomach will cause undue embarrassment for her at the worst possible moment: in front of her peers at school or camp this summer.
As before with health crisis #1, my parenting m.o. is to return her back to living a full and mostly uninterrupted life as soon as possible—or as soon as her body will allow it. Determined sorts, philosophically we are in accord that she will not be defined by her condition(s). I take her lead on how much (or how little) she wants to talk about it, and with whom, with the caveat that as before, I must tell anyone who is taking care of her (teachers, camp counselors, school principal, school nurse, etc.) what’s happening so we can set up protocols for her care and well-being, and they have a clear sense of what to do if something happens.
Though I’ve never done any time on the trapeze (and probably won’t. I don’t dig heights. Though I did hike Bonticou Crag: http://www.nynjtc.org/hike/bonticou-crag, so I guess anything is possible), parenting a child with a chronic illness seems a lot like what I imagine navigating the high wire would feel like. On the one side, you need to be supportive, empathetic, present. Nothing like a health crisis to remind you about who and what comes first. On the other, there’s the need to keep in place all of the expectations and limits that a high-spirited almost-tween needs. In her less than stellar moments, I often remind her that as her mom, my job is to raise a human being, not a beast. And while she does an admirable job holding it together for others, she can, at times, be a total pill with her close family.
Some of that was directed toward me yesterday afternoon, and I called her on it. After apologizing begrudgingly, E replied, “But I’m angry. I don’t know what to do with that.”
OK. No one likes being dumped on, but I take a step back from our mother-daughter fracas to appreciate her comment. No, I don’t like the behavior. And no, I don’t deserve it. But I am very grateful that my kid is so in touch with her feelings and able to express them. She’s always had a lot to say, and never had a problem saying it, often incisively. I have faith that her ability to identify and articulate her feelings will help her in this second-round fight back to better health.
Over the past few days, we’ve had an ongoing conversation about other things she can do to help her heal herself. She asked me what I do to stay in good health, so we discussed some of my go-to remedies. We talked about going to a doctor who she can talk about her feelings with. “Can we go Saturday?” she asked me. She’s eager. Yoga: Bored of downward dogging at age 5, she now says she’s willing to hit the mat again. We talked about acupuncture. E has witnessed me ‘get needled,’ and vehemently opposed it before. She’s now willing to try it. Like me, when faced with an acute health issue, she is game for the kitchen sink approach . . . don’t just do one thing, do many things. Then figure out what works.
So another chapter begins, the one where we learn through trial and error what works best to get her back in balance. In the meantime, I’ll stay up here on the trapeze and do the best job I can to not fail her. There will be no perfection; I expect to fall, maybe often at first. I am counting on those nets beneath me. But every day I’ll get myself back up there and keep trying. I owe her that.
Bravest of the Brave
“Life to you is a bold and dashing responsibility,” E’s fortune cookie, June 23, 2012
Since my last post, E has been symptomatic and often in pain for several weeks. When I called her GI doctor, Dr. S., early last week, they informed me that there was a cancellation; so instead of waiting another 10 days, we were able to move up E’s colonoscopy and endoscopy to last Thursday (the 21st). We mobilized quickly; did the prep (I think childbirth was easier); and showed up early Thursday morning. At this point, I was prepared to hear that she had IBD, but was hoping that it was an “early” case, that only slight to moderate inflammation would be found.
After a quick visit to her hematologist, we learned that her platelet count was well within normal range. All good there.
Then up to the outpatient surgical center. After a seemingly endless wait and several rounds of paperwork, E was finally brought in to the operating room. She counted down from 10, getting to two before the anesthesia did its work and I was ushered out of the room, her beloved Eeyore in hand.
Fellow parents, if there is one sight I hope you never have to witness, it’s seeing your child be put under. The horror and heartbreak of this visual—words cannot adequately describe it. This is my second time doing this, the first being her bone marrow test when she was 6. And despite the fact that she did it willingly this time—cheerfully, even, with a chipper “bye bye!”—it wasn’t any easier.
Deep breath. I regrouped. And then the wait. A little over an hour later, Dr. S came to get us (my mom was with me) and silently brought us back to the recovery room. I could tell from her expression that the news wasn’t good. Over the past few years I’ve learned it’s never really a good thing when the doctor looks troubled.
She told us she saw a thick wall of inflammation covering E’s colon, with inflammation in the upper tract as well. It sounded like she was surprised, too, by the severity of the disease. Signs were pointing to Crohn’s, but we would know more once the biopsy results were in, in about a week.
When E woke up, as promised, her first word was, “cookie.” (She hadn’t had any solids for a day and a half, and, as with all hospital trips, there was her favorite black-and-white cookie purchased from Lenny’s waiting for her.) She was in good cheer and happy to have the big test over with. After I tried to briefly explain that they saw some inflammation, she quipped, “My insides are a bouncy castle!” I let it go, happy she was happy it was all over with.
But in the days that followed, her stomach pain worsened. And on Saturday she could barely move. After speaking with the on-call doctor, we ended up spending a very long night in the local ER, where they did more blood work, gave her IV fluids and a CT scan to make sure there weren’t further developments or complications from the procedures. Luckily, there weren’t. Yesterday, I met with her Dr. S who confirmed that all signs are pointing to Crohn’s: another serious, potentially life-threatening lifelong condition E will have to deal with, just as we’re finally in a good place with the first one (ITP). It wasn’t unexpected, but it stung just the same.
(Note: I could succumb to a Nancy Kerrigan “Why us?” moment, but I don’t really believe in any sort of grand design determining this or any other outcome. So while that thought crosses my mind sometimes, like a pesky fly, I swat it away. I have no place for it.)
So, the news is not good. We have a plan, though, and great doctors who really care about E and getting her better. We have a wonderful support system, family and friends who helped get us through last time and I know will be there again for this. I’m confident we’ll get through this and get to a better place.
But right now . . . the part that’s most difficult right now is that my kid, my plucky, amazing, tough, resilient kid, seems resigned to her fate, which is so heartbreaking. From all I have witnessed as her mother, in everyday moments and as the one at her bedside, I can tell you that she is the bravest person I know. But right now, I’m not seeing the fight in her. Pain, lethargy, the gradual resignation that she once again is a “sick kid” are taking their toll on her, physically and emotionally.
I want my tenacious, vivacious fighter back. I’ll do whatever it takes to get her back. She’s too strong to go down with this blow. And hopefully I am, too.
Keeping it at Bay (or trying)
I’m long overdue for this catharsis, so hopefully this won’t be too arduous or too heavy-handed, but as the saying goes, here goes nothin’.
Our last hospital visit, nearly three weeks ago, brought good news and the promise of bad. First, the good: E’s platelets were once again at a very healthy level, leading us further toward the conclusion that her ITP may, in fact, be in remission. Two and a half years after diagnosis, this should have been cause to celebrate. But at its heels was the not-so-good news: Despite the fact that the past round of bloodwork testing for intestinal disorders such as colitis, Crohn’s and Celiac’s all came up negative in March, the pediatric gastroenterologist, Dr. S., believed that E does, in fact, have Crohn’s. (Apparently a fair number of her Crohn’s patients also tested negative on the bloodwork but still had it. In the wide world of medicine, they call that a false negative.) We were sent off to do more at-home tests and, depending on those results, the high likelihood of an impending colonoscopy.
This happiness was followed by our looping back to E’s hematologist, Dr. B. After she left the room I asked him, point blank, “Is this going to suck as much as ITP?” to which he replied, “It’s probably going to suck even more.”
The last at-home tests confirmed the need for a colonscopy. But the doctor’s first available morning appointment isn’t for another three weeks. And so we wait. And, as I have for the past two and a half years–since December 5, 2009, to be exact–I try to keep things as normal as possible.
The good part is, this time of year we’re almost too busy, it being high season with my work (mostly conferences) and E involved in an upcoming variety show, her ice skating show, and B just getting elected to the board of education and now gearing up for that. It seems like spring and fall explode with activities and not enough time to do them all–and I welcome all the distractions.
But in those quiet moments, in between A and B, I’m left with my thoughts. And though I fight every day not to live there, I feel like worry is my undercurrent–always there beneath the surface, ready to bubble up.
The rational mind says, “There’s no point in worrying. Worry when you have to.”
Dr. B. says, “Promise me one thing. DO NOT go online to research this until you know exactly what you’re dealing with.”
My friends ask, “How are you doing?” They want to know what it feels like.
I try to keep the worry at bay. I know—having been on both sides of it, the jinxing side and the optimist’s side—that you’re much better off saving the worry until you absolutely need it. But the truth is, it’s there. It can be diverted, but it cannot be denied.
My child is beautiful and full of life. And we have many happy moments full of laughter. And we try to make the best of things and enjoy the good moments. But at least two times a week, she complains of crippling stomach aches that stop her in her tracks. She’s had worse symptoms, too. There’s something to it—I fear the diagnosis of another chronic condition, promising more hospital visits, pain, and suffering; more to take her away from just being a kid. It feels unfair: Couldn’t she just get a break and be able to say she’s healthy, and know it’s the truth?
I’ve told her the basic facts, without embellishment. But knowing the contagion of moods, I have tried very hard to keep my worry as far away from her as possible. Perceptive and inquisitive, she probably senses in part what’s going on, though. I am not that good an actress, and she’s too good an investigative reporter.
And so we wait. And will face whatever it is with realism and, yes, a good dose of hopefulness. Because that’s just how we roll.